Breathing

[Guest guest]

Before I moved to London in 1997 my employer made me have a full physical,

including full hearing and full cardio tests. I did not have a diagnosis of CMT

then, but now that I do and have been reading the board, I find the following

things interesting:

1. I have always had bad knees

2. I have high arches progressively getting worse

3. At the time of my extensive physical, the doctors were shocked that

I had reduced lung capacity (not breathing deep enough or exhaling deep

enough) - especially as I was very fit and no physical issues

4. I also was diagnosed with damaged hearing - low band and high band -

and since then this has developed into low grade persistent ringing.

I guess there are two ways to look at this - either everything can be linked to

CMT, or everything is as it is. I am not sure - but I sure do like hearing

about everyone's experiences. We all have different lives, live in different

places, have different health systems and insurance woes - but the sharing is an

amazing thing. I particularly have found the strands on " creepy crawly " leg

muscle movement, breathing, and knee problems fascinating, as I have some of the

same issues.

So on the sharing note, I have to have a short general anaesthetic

procedure. I have told the doctor that I have CMT and gave them my

neurologists name, and also have seen on some sites there are a list of do and

don't drugs. Does anyone have any specific dos and don'ts on anaesthesia that I

can share, or some sites or info? Thanks so much!

Kind regards from a hot (and sunny) London - it was about 85 degrees today in

the shade and blue skies!

- Donna from London

[Guest guest]

If your doc doesn't listen, best to find another, although I realize

you are 'trapped' with Medicaid. Perhaps you can plead with MDA to

schedule you an appointment sooner. The headaches may be coming from

sleep apnea. Would your doc listen to that and order a sleep study

done?

Breathing is a serious issue for persons with CMT. And you have good

info. Age doesn't matter. You might want to look through our Archived

posts on the subject.

~ Gretchen

[Guest guest]

So true Gretchen even though many providers don't " validate " breathing

as an issue.

I have had CMT since very young and fall into the " severe " category, I

now use a bi-pap at night to help me breathe, the " official " diagnosis

is sleep apnea even though I did not have headaches and many of the

other " normal " symptoms -- my neurologist at the time (I have since

changed clinics) didn't think the apnea test was necessary and only did

it to satisfy my PCP -- he was " surprised " by the results.

CMT'ers should definitely have an occasional pulmonary function test as

well as the apnea test if you have any difficulty w/shortness of breath

and extreme fatique.